Shreenik Khadka, the boy who picked a fight with leukaemia

SHREENIK never stood a chance. The weeks his son spent confined to a hospital bed, the aggressive chemotherapy to beat leukaemia, the pain, all flashed before Narayan Khadka’s eyes. It had all been for nothing.

Shreenik’s only hope was a stem cell transplant. Neither he nor his wife were a match and no donor could be found. Time was running out and no-one could save his little boy.

“You feel like you’ve failed as a parent, putting him through all that,” sighs the 32-year-old Gurkha Signals sergeant. “Then you are told he needs a transplant but they can’t find a 100 per cent match. Anything under 70 per cent could be fatal. The odds were always against him. You feel like you’ve run out of options.”

Weeks before Christmas last year, the lively toddler came down with what seemed like a benign virus. But far from abetting, his symptoms only worsened. His temperature rose alarmingly, he stopped eating and became prone to inexplicable bouts of sickness. He was eventually admitted to hospital.

Through the battery of tests his parents tried to remain optimistic, stubbornly clinging to the smallest sign of improvement.

Two days later, the bombshell dropped. The four-year-old had a rare form of blood cancer, acute myeloid leukaemia with a meagre 30 per cent chance of survival.

“I just broke down in the doctor’s office,” recalls mum Srijana, 30, from Eldene. “You want to believe your child will be fine. When we found out the prognosis was 30 per cent survival it was heart-breaking.”

Before the year’s end Shreenik was transferred to Bristol Children’s Hospital for the first of three cycles of aggressive chemotherapy.

Despite the debilitating side-effects, vomiting and persistent fever, Shreenik showed tremendous resilience, filling his parents with hope he would beat the odds and make a full recovery.

“It was really hard to see him like this,” says Narayan with emotion. “He lost his appetite, he was sick all the time, he had a fever - every side-effect. But even during the chemo he was still running around and playing hide and seek. He would be sick and then just keep going. The doctors and nurses couldn’t believe how active he was despite the treatment. He was such a good boy.”

But the battle ahead was only just beginning. Days before the start of his second round of chemotherapy treatment, doctors discovered the little boy had a rare DNA mutation meaning chemo alone would never successfully tackle the cancer. A stem cell transplant would be his only chance. No-one in the family was the required 100 per cent match so they set out to find a suitable donor.

But the dearth of South Asian donors on the bone marrow register brought their search to a screeching halt. They were at an impasse.

“Hearing the diagnosis is already devastating but to hear that there is no match for your son because no-one from the Asian community is registered is a blow,” says Narayan.

Only 60 per cent of transplant recipients receive the best possible match. But this drops dramatically to 20.5 per cent for black, Asian or ethnic minority patients due to the lack of donors from the same background.

“You don’t want to hear that something like this stands between your son and his chance to survive,” he says shaking his head. “Every parent is a 50 per cent match to their child so a transplant from me was very risky. You see children who have a 90 per cent match transplant and still don’t survive. But we didn’t have another option. You would go to any length to save your child. We just hoped it would work and we could save him.”

“If you do it he’s still in danger, if you don’t it might be fatal,” adds Srijana. “Every single day you have to make all these horrible decisions. Doctors give you an option but it’s not really an option. You have to do whatever you can.”

Bone marrow is the spongy tissue found in the hollow centres of some bones. The tissue contains specialist stem cells which produce blood cells. For around 80 per cent of donations blood is drawn from one arm, centrifuged to extract the blood stem cells, and returned to the other arm. The donation typically lasts a few hours.

Before the transplant, Shreenik had to endure another life-threatening course of chemotherapy in April.

He received the transplant but unfortunately his body rejected his father’s stem cells. A second transplant failed and grasping at straws, doctors finally decided on an autograft stem cell transplant using Shreenik’s own stem cells.

Slowly the five-year-old began regaining strength. While he is now in remission, there is a 70 per cent chance of the cancer returning. His best hope is a third transplant from a perfect match.

Determined to ensure no other family endures what they went through, Narayan and Srijana partnered with blood cancer charity Anthony Nolan while their son was still undergoing chemotherapy to launch a nationwide campaign calling on Gurkhas and the South Asian community to join the bone marrow register.

Thanks to Shreenik’s cheeky smile and their keen fundraising efforts, they have inspired thousands to register.

“It struck me really hard when we found out Asian people weren’t on the register,” said Narayan. “We wanted something positive to come of this, help other kids like Shreenik.

“At the moment we don’t know if the cancer will come back but if it does we want to be prepared and hopefully have a donor for Shreenik and for anyone else who needs one.”

As part of the campaign, the couple are also urging people to donate their newborns’ umbilical cord to save cancer patients. As cord blood does not have to be as closely matched to the patient as a marrow donor it is a great alternative for stem cell transplant.

Thanks to his incredible courage and his devoted parents’ tireless campaigning, Shreenik has been shortlisted for Young Hero of the Year at the Anthony Nolan Supporter Awards 2015. The winner will be announced at a ceremony at the House of Commons on November 17.

“We feel so proud and honoured that Shreenik has been nominated,” adds his father with a warm smile. “He’s been through a lot with the chemo and not many people would have survived so many transplants. He is a fighter.”